Health

Ten years later, the bad news gets worse

Linda McQuaig July 14 1980
Health

Ten years later, the bad news gets worse

Linda McQuaig July 14 1980

Ten years later, the bad news gets worse

Health

Linda McQuaig

It’s nearly 10 years since millions of North American women who took the synthetic estrogen DES got the first bad news: the drug they had obediently swallowed during pregnancy—on their doctors’ advice—could have devastating effects on their daughters. In a small number of cases, daughters had developed rare genital cancers which left some dead and others without a vagina. Now, many women who still feel guilty about exposing their daughters to DES before birth are having to digest more bad news: their sons may also bear the consequences of the little pills they took decades ago.

DES, the abbreviated name for the drug diethylstilbestrol, was sold to Canadian women for more than 20 years as a preventive for miscarriage. Yet the effects of the drug—particularly the more recently discovered effects on sons—have received scant publicity in Canada. In contrast to the American response, there has been little attempt

by Canadian authorities to track down those who were exposed to the drug—an omission that could have serious consequences for a number of Canadians.

As DES-exposed sons advance into their teens and 20s, they are showing higher than usual incidences of genital abnormalities, including benign cysts and undescended testicles—a condition known to increase the risk of cancer. And a University of Chicago team that examined 163 DES sons in 1977 recently found that four suffered from microphallus, the medical term for a penis shorter than IV2 inches. If this wasn’t bad enough, a startling 26 per cent of the men had sperm counts so low they may well be sterile. Don Cameron, a 25year-old computer programmer in Portland, Oregon, who just discovered his mother took DES is now waiting to be tested for sterility. Engaged to be married, he finds the odds highly upsetting: “I really want to have kids.”

Exposure to DES has also left some young men almost helpless to control their urinary functions. A 29-year-old

New York dentist has been plagued by urinary problems since he was 15—including times when he has had to urinate every 15 minutes for days on end. The problem has been getting worse in recent years, he says. “I’ve gotten into the habit of stuffing a Kotex down my pants when I’m at work.” The disorder causes him considerable embarrassment, but he counts himself lucky. “At least I don’t have microphallus.”

The plight of DES-exposed daughters remains more serious. A high proportion have benign abnormalities which sometimes can only be detected by examining the vagina with a high-powered microscope. A much smaller number—less than one in 1,000—develop adenocarcinoma, a rare cancer of the cervix and vagina which is usually only found in much older women. Close to 300 young women whose mothers took DES have developed the disease, many while still in their teens, some as young as 7. Seventy of them have already died and most of the others are now unable to have children after undergoing ma-

jor surgery, often involving the removal of the vagina. Surgeons have tried to reconstruct vaginas so that these women can have sexual intercourse, but Diane Anderson of the University of Chicago’s adenocarcinoma registry says it’s not clear how psychologically effective the efforts have been. “We don’t ask them if it works. But we do hear of a lot of divorces after surgery.”

An estimated two million women in the United States are believed to have taken DES during pregnancy between the early ’40s and the early ’70s. But it remains a mystery just how many Canadians took it. Canadian authorities haven’t conducted any studies and Dr. Ojars Lucis in the federal Bureau of Drugs won’t even hazard a guess. Nor will the Canadian Medical Association, although CMA spokesman Douglas Geekie thinks the drug was not widely used in Canada the way it was in the United States. But James Price, a Toronto pharmacist who worked in drug stores in Kingston, Niagara Falls, Brockville, Collingwood and Toronto in the ’40s, ’50s and ’60s recalls that DES was commonly prescribed to pregnant women. “I’d say about 40 per cent of obstetricians prescribed it,” he estimates.

A more disturbing question may be how many of the Canadians who took it even realize they did. In the United States, publicity and lawsuits over DES have led the state of New York to set up eight special DES screening centres. And women who took the drug have banded together to form DES action groups in 15 American cities. Evelyn Goldberg of DES Action New York says there have been more than 8,000 inquiries recently. “In some rural areas it was given out routinely to all pregnant women.”

No DES groups have formed in Canada, despite the fact that four documented cases of adenocarcinoma in Canadian DES daughters have been registered at the University of Chicago. The reason may be partly that Canadian women who took the drug seem reluctant to identify themselves publicly for fear of embarrassing their children. One British Columbia woman whose daughter developed a DES-related tumor refused to even allow the town she lives in to be named, for fear that her daughter’s identity could be established. “She’s barely talked to me since she found out about all this,” the woman explained. “She’s so sensitive about it.” Yet without DES groups to push the issue, there’s been relatively little public awareness of the problem, which may mean some serious conditions are going undetected. Anderson of the Chicago registry emphasizes the need for women who took DES to be notified so that their children can be examined. Sons are advised to go to a

urologist. Daughters should be given gynecological examinations every six months from the age of 14, or even younger if unusual symptoms develop. Anderson says this is important since the chances of surviving adenocarcinoma are good if the cancer is found early. As it develops the survival rate drops. Dr. Arthur Herbst, who heads the Chicago registry, says he also advises all DES daughters to avoid taking additional estrogens, including the pill.

But getting past medical information has often proved difficult. In many cases, doctors have died or records have been lost. Anderson also believes fear of lawsuits or bad publicity has frightened some doctors into holding back their files. “One doctor told a DES mother his records had been destroyed by fire. Then when we contacted him he told us they’d been destroyed by flood. It makes you wonder.”

The Canadian federal government has made little attempt to find out if doctors have notified their DES-exposed patients. The health and welfare ministry advised all doctors of the danger of DES in 1970 and urged them to follow up on their patients, but then never checked to see if doctors heeded the advice. “That’s a professional responsibility,” says ministry spokesman Lucis. The Canadian Medical Association has run a number of articles in its journal advising doctors to contact DES patients but as CMA spokesman Geekie admits: “There’s no question a sizable number [of patients] have never been tracked down.” Some Canadian women who took DES report little co-operation from doctors in digging out their records. A 47-year-old Toronto woman says she phoned her former obstetrician four times over a period of several months, requesting to know what medication she had taken during pregnancy. Her calls were never returned. It was only after she became angry with the nurse that the doctor came on the line, confirmed that she had taken DES and told her it “wasn’t too soon” for her 11-yearold daughter to have a gynecological exam. “Good Lord, I could hardly believe it,” she says. “Why hadn’t he taken the initiative himself?”

The horror story of DES began to unfold in the early ’70s after seven young women in the Boston area whose mothers took DES developed adenocarcinoma. Some doctors argue, however, that there were earlier warning signals: tests in the late ’30s showed DES could cause cancer in mice. But even now, the full story of the drug’s dangers may not yet be known. “Who knows what will happen to these kids in later years?” says Fay Cohen of DES Action New York. “It’s not clear yet whether there’ll be any effects on the children of the children whose mothers took it.”